@article {631,
	title = {Enrolling Genomics Research Participants through a Clinical Setting: the Impact of Existing Clinical Relationships on Informed Consent and Expectations for Return of Research Results.},
	journal = {J Genet Couns},
	volume = {27},
	year = {2018},
	month = {2018 02},
	pages = {263-273},
	abstract = {<p>Genetic counselors working in a clinical setting may find themselves recruiting, enrolling, and returning results for genomic research, and existing clinical relationships with study participants may impact these research interactions. We present a qualitative study using semi-structured interviews of participants enrolled in a genome sequencing/exome sequencing (GS/ES) study at the same institution where they receive clinical care. Interviews were coded for motivations to participate and expectations of this research. The interviews revealed common motivations for participation, including altruism and hope for benefit for themselves, family members, and/or others with their condition. Additionally, themes emerged related to unintentional influence based on trust of the clinical provider that recruited them to the study. Participant trust in the enrolling provider at times appeared to extend to the study team to decide which research results to return and to do so in an appropriate format. Participants also based expectations for research results return on previous clinical genetic testing experiences, which may or may not be realistic depending on study design. It is imperative that genetic counselors enrolling patients into research studies be aware of the potential influence of their clinical relationship on potential subjects, be transparent about their role on the study team, and help set expectations about the study process, including results return.</p>},
	keywords = {Base Sequence, Decision Making, Family, Female, Genetic Testing, Humans, Informed Consent, Male, Motivation, Qualitative Research, Research Design, Trust},
	issn = {1573-3599},
	doi = {10.1007/s10897-017-0143-2},
	author = {Berrios, Courtney and James, Cynthia A and Raraigh, Karen and Bollinger, Juli and Murray, Brittney and Tichnell, Crystal and Applegate, Carolyn D and Bergner, Amanda L}
}
@article {22,
	title = {My46: a Web-based tool for self-guided management of genomic test results in research and clinical settings.},
	journal = {Genet Med},
	volume = {19},
	year = {2017},
	month = {2017 Apr},
	pages = {467-475},
	abstract = {<p>A major challenge to implementing precision medicine is the need for an efficient and cost-effective strategy for returning individual genomic test results that is easily scalable and can be incorporated into multiple models of clinical practice. My46 is a Web-based tool for managing the return of genetic results that was designed and developed to support a wide range of approaches to disclosing results, ranging from traditional face-to-face disclosure to self-guided models. My46 has five key functions: set and modify results-return preferences, return results, educate, manage the return of results, and assess the return of results. These key functions are supported by six distinct modules and a suite of features that enhance the user experience, ease site navigation, facilitate knowledge sharing, and enable results-return tracking. My46 is a potentially effective solution for returning results and supports current trends toward shared decision making between patients and providers and patient-driven health management.Genet Med 19 4, 467-475.</p>},
	keywords = {Biomedical Research, Computational Biology, Decision Making, Genomics, Humans, Internet, Medical Informatics, Patient Access to Records, Precision Medicine},
	issn = {1530-0366},
	doi = {10.1038/gim.2016.133},
	author = {Tabor, Holly K and Jamal, Seema M and Yu, Joon-Ho and Crouch, Julia M and Shankar, Aditi G and Dent, Karin M and Anderson, Nick and Miller, Damon A and Futral, Brett T and Bamshad, Michael J}
}
